Posted By

View other posts by

Activity

Replies: 12

Now that my spinal fluid has been cleared up, my leptominingial mets are getting a bit worse (lining of my brain). So Dr. Papa thinks I should do a 10 day course of WBR along with Temodar. I was expecting that would probably be the results / recommendations. Problem is how much of the T. cost is my insurance going to cover? Hopefully I'll know tomorrow, but since I needed to start it tonight, we're already behind schedule. Has anyone had any success with assistance?

I've heard it's not too bad but I'd like any advice / input on the WBR / T. treatment too!

I am sorry you are having to go through this. I am not familiar with any of the treatments that your oncol is wanting you to participate in. I do know an organization that could possibly assist you financially with the drug cost . Patient Advocate Foundation has a program call "Co-Pay Relief" here is the link to their actual Website http://www.patientadvocate.org/. They have several different programs to assist patients with any type of illness. I hope that you are able to find the assistance you need through them. Let me know if there is anything I can do to help. Best of luck with treatment

Hi Amy,
I just completed 3 cycles of Temodar and I can't really complain of too many side effects except for fatigue. And I highly recommend following the directions about taking the drug on an empty stomach. I made that mistake the first cycle and had really bad nausea.

Good luck with the financial research and treatment results.

P.S. I have only been on this board since '09 but have followed your posts and you are such an inspiration to me and so many. It sincerely was a privilege to respond to u and give u some information hopefully it helped. Again, best of luck...praying for you, as everyone else on the board...when I read the other posts it is so clear what a special person u are and how loved u are by so many...it just leaps off the pages!!!

A REIMBURSEMENT ASSISTANCE PROGRAM FOR
ONCOLOGY PATIENTS TAKING TEMODAR

Schering Corporation is dedicated to improving the lives of patients, working to develop new treatments, advancing public awareness, and supporting patient groups. COMMITMENT TO CARE® has been designed to ensure that oncology patients have access to therapy, regardless of their ability to pay, and is just one of several patient-support programs offered by Schering.

IMPORTANT FACTS ABOUT SCHERING'S COMMITMENT TO CARE®

A comprehensive compassionate drug and reimbursement assistance program in the United States, helping more than 75,000 patients since inception (1996)

Compassionate drug program eligibility based on income, with no limit on assets

Assists patients and providers with all aspects of reimbursement assistance to ensure that access to Schering oncology medications is not limited by the patient's ability to pay

UNLIKE MOST OTHER REIMBURSEMENT PROGRAMS, COMMITMENT TO CARE:

is telephone based

offers the patient easy access to a reimbursement assistance specialist with rapid follow-up

eliminates extensive paperwork

does not require that patients be indigent to qualify for assistance

PROGRAM OBJECTIVES

To help eligible patients taking TEMODAR® find reimbursement assistance for their therapy

PROGRAM BENEFITS & SERVICES

Phone assistance available weekdays, 9:00 AM to 8:00 PM ET

Simple patient enrollment procedures with minimal paperwork

Researches reimbursement assistance sources for individual patients

Verification and exploration of insurance coverage

Assistance in acquiring pre-authorization or pre-certification from insurance companies for oncology therapy

Assistance in appealing insurance company denials

Consideration for a compassionate drug program when reimbursement assistance

sources cannot be found

Referrals to state and local assistance programs

Reviews of Medicare and Medicaid benefits to ensure accurate and updated coverage information

Schering Corporation is dedicated to improving the lives of patients, working to develop new treatments, advancing public awareness, and supporting patient groups. COMMITMENT TO CARE® has been designed to ensure that oncology patients have access to therapy, regardless of their ability to pay, and is just one of several patient-support programs offered by Schering.

PROGRAM OBJECTIVES

To help eligible patients taking TEMODAR® find reimbursement assistance for their therapy

Call toll free 1·800·521·7157

IMPORTANT FACTS ABOUT SCHERING'S COMMITMENT TO CARE®

A comprehensive compassionate drug and reimbursement assistance program in the United States, helping more than 75,000 patients since inception (1996)

Compassionate drug program eligibility based on income, with no limit on assets

Assists patients and providers with all aspects of reimbursement assistance to ensure that access to Schering oncology medications is not limited by the patient's ability to pay

UNLIKE MOST OTHER REIMBURSEMENT PROGRAMS, COMMITMENT TO CARE:

is telephone based

offers the patient easy access to a reimbursement assistance specialist with rapid follow-up

eliminates extensive paperwork

does not require that patients be indigent to qualify for assistance

Schering's COMMITMENT TO CARE® is open to any and all callers — from patients to professionals.

PROGRAM BENEFITS & SERVICES

Phone assistance available weekdays, 9:00 AM to 8:00 PM ET

Simple patient enrollment procedures with minimal paperwork

Researches reimbursement assistance sources for individual patients

Verification and exploration of insurance coverage

Assistance in acquiring pre-authorization or pre-certification from insurance companies for oncology therapy

Assistance in appealing insurance company denials

Reviews of Medicare and Medicaid benefits to ensure accurate and updated coverage information

Consideration for a compassionate drug program when reimbursement assistance sources cannot be found

This information is for general patient educational & information purposes only. It should not be used for diagnosing/treating a health problem or disease. If you have or suspect you may have a health problem, you should consult your healthcare provider.

I found the same info as Michael, so you can try calling the number listed on the website. I will see what I can find out within the company but I am sure it will be the same or similar info. Let me know if you need any help.

I would make an appt with a neurosurgeon and see what their opinion is regarding WBR and Temodar. Ask about compassionate use of ipilimumab, and possibly avastatin(off label). I would also ask if the meninges can be removed surgically, now that there has been response to IL2.

Thanks John! I did 3 rounds of biochem last fall. Mixed response, terrible side effects (blood counts, etc). I have my rad onc appt. today and we'll get started as soon as possible. Fri or Mon I guess. I should be able to start Temodar today. I feel pretty comfortable with then plan. We've looked at Avastin and it's on the backburner as a possibility if the Tem. doesn't seem effective. I know MDA is doing an ipi / Temodar trial but I haven't looked into that yet. I'll keep it in mind. Luckily I responded very well to the intrathecial IL2 so hopefully the spinal fluid will stay clear and I won't see much progression.

Buying off of the internet each dose(pill) of Temodar cost about $150. I took Temodar for two years with numerous other chemo's but eveyone says fatgue is the biggest side effect. I had wide brain raditation 30 days ago. The radiation itself is no big deal. I am currently experiencing confusion and memory loss. I was hoping that it would start going away by now. The Onc has me on Ritalin to help me focus and help keep me awake during the day. I no longer take Temodar since I am in compassionate use trial with Ipi.

Update, tonight I actually dusted off my treadmill and used it for the first time in years. A 1/4 of a mile, but it is a start.

Yesterday, I actually vaccumed the downstairs for the first time in a year. I am picking up a little energy as I get further away from the chemo treatments.

I'm glad to hear from you Kevin! Sounds like you are improving if vacuuming is even a consideration, lol! I see the rad onc today and probably start tomorrow. I'm already on Ritalin for fatigue so I may ask her about upping the dose if necessary.

Good news from my insurance co. - approved on the 120 mg. dose of Temodar so I'm looking at about $750 or a little less every cycle - 21 days on then one week off. Not easy to swing but certainly more do-able than $5000! I'll should start it tonight. They said to take it before bed.

so here goes....

Take care of yourself Kevin and feel free to call me if you ever need an ear!